Plaquenil/ Quinoric - re eye tests and weight?

Mat48

Hi - can anyone here tell me if they have been on Hydroxichloraquine and had retinal trouble? I don't have any yet but am a bit concerned because I was changed from the brand to the generic and looked this up to see if there were any problems. My daily 400mg Plaquenil was making me feel a bit queasy everyday and I'm on MTX too so couldn't bear any extra sickness. When I was googling Hydroxy I came to two blogs flagging up the problem with retinal damage. Both said that they had been put on too high doses for their body weight and height and had sustained retinal damage quite quickly.

I did query how often I should have my eyes tested when I started it 3 months back and my rheumy said that eye problems are rare and usually the toxicity builds up over time and after about 5 years the dose should be reduced probably but the chances of problems were very unlikely at this stage. He said every 2 year eye checks should be fine. I was reassured by this but now wonder if it is an issue that I'm slowly but surely losing weight and am only 5'2"? I will ask my GP when I get my blood done on Wednesday but it would be good to know if anyone else has had a problem meanwhile. I'm an artist so my eyes are my life really!

julie47

Hi Mat

I am also on this drug and have been for about three years. When I first started taking it I was never advised to have my eyes tested. The first I knew about this was when I went back to the rhummy about a year later and they give me the colour blind test. they also told me that I should have my eyes tested every year. Apparently they used to give regular eye tests for people on hydroxy for free but they stopped doing this due to cost and the fact that people with problems were very few.
I now have my eyes tested every year.

Love Juliepf x

Mat48

Thanks Julie - this is the kind of answer I was hoping to get. Maybe I'm just looking for something to fret about but these 2 blogs (I know it's the peril of looking stuff up online!) were both UK based and rung true so eyes being fundamental and all that - I thought is do some more research before asking my GP about the weight aspect tomorrow. Mat x

dreamdaisy

I don't know as I'm not on this med but if you are concerned then I would do as Julie does and have regular eye checks. Side-effects are not guaranteed but we do have to play our part viz getting the various monitoring tests done. I wish you well. DD

dibdab

Hi Mat,

I've been taking plaquinel for 5 years with no visual problems, though I take it in cocktail with sulfasalazine and gold injections. I was advised to have annual eye tests which I do, and the optician knows to check out the specific possible problem. I guess all medication has potential side effects, and it's about weighing up the pros and cons. I hope your medication works for you.

Deb

Mat48

Thanks DD - apparently at the dose I'm on (400mg)I won't qualify for yearly nhs eye tests yet which is a tad annoying but I guess I can pay for one :? . It's really that the dose I'm on was worked out from when I was over 2 stone heavier and body weight affects the dosage too the rheumy told me. We can't always just rely on our health care professionals to join up the dots if you know what I mean..my eyes my life! Mat

dreamdaisy

I've always paid for eye tests and that will remain the case until I hit the 'jackpot' of being a pensioner. £26 isn't too much to shell out but I guess it may cost more for you because of your remote location. DD

Mat48

Yes there's only one optometrist up here DD and they are pretty dear I suspect. I'm only a low income artist, already have expensive vary focal glasses and private dentist to fork out for but eyes are fundamental and I'll pay for the extra test if need be. I really just wanted to see if anyone here had actually suffered from this retinal damage from Hydroxy or been overdosed having lost weight but i am very glad that no one has said yes to me yet!

dreamdaisy

I know there are a few on here with eye trouble but I don't know how many of them have that due to hydroxy-related difficulties. The forum is pretty quiet at the moment what with one thing and another but you never know, someone may look in and spot this. Hopefully it's reassured you a little that in addition to Julie dibdab is also getting on OK with it. DD

Mat48

Yes DD I'm reassured thank-you. Mat x

tillytop

Hello Mat

There was an interesting post on exactly this subject on the National Rheumatoid Arthritis Society blog on "Health Unlocked" the other day.

I have put a link to the site below for you - if you do want to access it, the post I mention is listed under the "questions" section of the site, under the heading "Quinoric now, what happened to Plaquenil".

http://nras.healthunlocked.com/

Tillyxxx

Mat48

Thanks Tilly! Mat

lynnmick

hi mat,

Ive been on plaquenil for 18 months 400mg a day and i take 2 tabs together after tea which is what the rheumy advised me to do. I have eye tests every year, and haven't any problems. I'm hoping that i'm on the correct dosage though has i'm only 5 foot and 8 stone 12, didn't really know that weight etc affected the dosage.

Lynn x

Mat48

Oh sorry if I've worried you Lynn. I asked my GP today and he weighed me and said that I'm still well within the guidelines for the dosage but it may be worth your while double checking. He explained that eye problems are now known to be extremely rare with Hydroxy and that he wouldn't want me to drop my dosage at this stage having just dropped the MTX to 15mg as I may flare up. If they can get my ESR back down to a reasonable level then he said I might be dropped to a maintenance dose of 200mg if the rheumy thinks this is okay but it's still too high for comfort. It has reassured me a lot and as no one has come on this thread with related eye problems I am sure I've been being OTT! Mat x

suzygirl

Plaquenil related retinopathy is rare, and usually reversible once the tablets are stopped. The longer you are on plaquenil, the greater the risk which is why the maintenance dose is introduced. It is a drug that builds up in your system.

However as long as you have yearly eye tests which should include a visual field test then your chances of it developing are minimal.

I hope this helps.

Mat48

Thanks Suzygirl - yes I have learned all this but the eye tests are not yearly anymore because the risk is thought to be sufficiently low now to only have them 2 yearly my optician says. It was just in connection with my weightloss that I was concerned but not any more. Mat x

suzygirl

Respectfully may I suggest you insist on yearly tests. I am an SLE sufferer amongst other things, plaquenil is the first med prescribed. Therefore I know what I am talking about. Try this forum for further info

http://www.thelupussite.com/forum/

Ask about plaquenil, eyetests and weight and see your responses. If it gets moerated, PM me.

My facts are accurate, unfortunately docs etc are getting complacent over hydroxy risks which can cause potential probs. Its not a big deal, getting an eye test and it prevents further complications.

Just a person with your best interests at heart. Sometimes we have to be our own advocate.

Mat48

Thanks - I had an eye test (plus new glasses) about 4 months ago so discussed it with my optician then who asked me to double check with rheumy who said 2 years should be fine because of low risk from this dose. I asked GP today and he looked it up and said that it has been recently changed according to dose so only those on 600mg get yearly NHS tests now. I feel irritated by this too because I have monthly monitoring for MTX so getting yearly eye tests when I wear glasses, am nearly 50, am an artist and am on Hydroxy doesn't seem such a big ask.

As DD suggested I will pay if necessary but I do agree with you that if we are put on these disease modifying drugs because of horrible diseases such as RA or Lupus we should be vigilantly monitored too. Mat x